Medical and Healthcare Navigation
The Community Alternatives Program for Children (CAP/C) is a North Carolina Medicaid program that provides care for medically fragile children in their own homes instead of hospital or nursing home. The program provides services that support the child’s health and well-being in a community setting.
The EveryLife Foundation empowers people with rare diseases to change public policy and improve their own healthcare. It does this by educating and mobilizing patients and their families to advocate directly with government officials, rather than speaking for them.
The Family Support Network of North Carolina (FSN of NC) provides free, confidential support to families who have children with special needs. They connect families with trained mentors, resources, and support groups to help them navigate challenges and advocate for their children.
This is a non-profit patient advocacy organization dedicated to serving the worldwide rare disease community. It provides education, resources, and tools for patients and advocates. The organization’s goal is to unite and empower people to drive progress in diagnosis, treatment, and research for the more than 400 million people affected by rare diseases around the globe.
NORD helps those facing a rare disease listed on their website with obtaining medications, financial help with insurance premiums and co-pays, diagnostic testing assistance, caregiver respite, emotional support, and knowledge. The National Organization for Rare Disorders (NORD) is a group that helps people with rare diseases by providing resources, support, and unified voice for policy and research. It connects patients and caregivers with support programs, information about rare diseases, and a network of Centers of Excellence for treatment.